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ME Association Press Release: People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis

Discussion in 'General ME/CFS News' started by Eagles, Mar 16, 2018.

  1. Eagles

    Eagles Established Member (Voting Rights)

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  2. Trish

    Trish Moderator Staff Member

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    I hope the media pick this up and publish some good articles.
    I am concerned by this line in the Press Release:
    Yet the study itself says:
    In other words, the study was entirely based on the questionnaire data from the Biobank participants, not on their blood samples.

    @Russell Fleming
     
  3. Awol

    Awol Senior Member (Voting Rights)

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    Shouldn't this say part-funded? How much funding has been contributed by MEA and other charities and funders?

     
  4. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    Thanks Trish. Slipped through my radar - little bugger. Corrected now :)
     
  5. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    The ME Association has been funding the biobank on its own for several years now. Initially there was joint funding but once it became established the others pulled out. We've just agreed further funding for another two years.

    This is all separate to the NIH grant(s) which are for specific research projects - e.g. the longitudinal study etc.
     
  6. Andy

    Andy Committee Member

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  7. Webdog

    Webdog Senior Member (Voting Rights)

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    I've been unsuccessfully trying to get my HMO to recognize the need for an ME/CFS specialist, just as they have many MS specialists.

    Based on prevalence figures, my HMO should have over 50,000 ME/CFS patients. No specialist.

    I will show them this article/study. Perhaps it will make a difference.

    ETA: I just received a letter stating that my request for ME/CFS specialist care will be considered by a committee. I've attached links to the study and ME Association article to my request as supporting evidence.
     
    Last edited: Mar 16, 2018
  8. Awol

    Awol Senior Member (Voting Rights)

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    Thanks for clarifying Russell, and Andy for the link..
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Thread merged

    "A misunderstood disease wrongly labelled make-believe by some GPs is more devastating to sufferers than multiple sclerosis, a new scientific study has found.

    More than 250,000 people in the UK have ME (myalgic encephalomyelitis), which manifests as unrelenting fatigue and profound pain. The condition, also known as Chronic Fatigue Syndrome, has no known cure and is made worse by exertion.

    Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, days, weeks or longer.

    But, despite the illness being recognised as a neurological condition by the World Health Organisation, patients are often branded hysterical, hypochondriac or even lazy. Many ME sufferers report having to give up employment and tell of a struggle to obtain benefits.

    Now a study shows that people with ME can be more disabled than those who suffer from multiple sclerosis, a similar but recognised illness that affects more than 100,000 in the UK."

    rest of article here:
    http://www.ekklesia.co.uk/node/25434
     
    Last edited by a moderator: Mar 23, 2018
  10. Trish

    Trish Moderator Staff Member

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    Good to see the MEA press release being picked up, even if by a publication I've never heard of!
     

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